Remicade Not Working...Other Options?

I started Remicade a little while ago and experienced the delayed allergic reaction (4 days later) to the treatment where I had excruciating muscle and joint pain, sometimes to the point where I could barely get up out of bed. This lasts anywhere from 1 - 1.5 weeks at a time after each infusion. My doctor then had me ween off of my prednisone completely so that we could sort out the side effects. The second I went off of the prednisone, the bleeding returned as well as an increase in the frequency of having to go to the washroom. It basically feels as if I am a couple days away from being back in the hospital with a horrible flare-up.

 

My doctor is telling me that the only option I have left is surgery but I don't know if I really believe him. I have heard about Humira and was curious about that. I have already tried asacol and mezavant. I am just wondering what has helped others and, most importantly, are they happy with the treatment? I am also interested in hearing from anyone who has had surgery to remove their bowel and your experience with that. Any info and suggestions would be great, thanks!

I was in the hospital a couple months ago with a bowel infection and was supposed to be given a dietician to help me come up with a personalized diet. However, the hospital in my hometown isn't that great with resources and they never sent the dietician to help me. I am going back to see my GI Doc on march 31st and was going to ask him about diet modification. I keep a journal of everything I eat and how I am feeling each day so I am hoping it can help.

I am still pretty careful about what I eat but I wish I could have a specialist help me out.

I see you are on a special carb diet. Has it worked well for you?

I can completely relate to your joint pain problem. I was in the hospital in September with a severe flare-up of UC. The doctors recommend I try Remicade to get the flare under control since Prednisone wasn't working. If the Remicade didn't work in a week, I would have to get emergency surgery since I was basically withering away and getting sicker by the day. Fortunately the Remicade did start to work, but about 5 days after my infusion, while I was still in the hospital, I started to get this horrible pain in my lower back and hips. They did an xray and found nothing. Of course, I suspected the Remicade right away but the doctors told me I was just sore from lying in a hospital bed. Once the doctors were sure the Remicade was putting me in remission, I got discharged from the hospital. However, the joint pain got even worse that night... and was now in my knees and hands. I couldn't walk and it made me writhe around and cry in pain. It felt like I was being stabbed with an ice pick. It continued to worsen over the next week and the doctors finally confirmed it was likely from the Remicade. The pain got a bit worse, and I was so afraid it was going to be permanent. However, the pain eventually dissipated and was completely gone in 6-8 weeks. All future infusions were cancelled.

My doctors never offered me an option of Humira, but I wouldn't have wanted to try it anyway. I had decided no more drugs-- I wanted surgery. I actually hated the idea of Remicade from the start... but did not want to go into emergency surgery when I was so incredibly weak and sick. I am glad it at least got me out of the hospital and allowed me to gain some strength to get surgery under much better terms a month later with a top CR surgeon. I am now 4 months post op. I chose a permanent ileostomy (didn't want to take the risk of J-pouch complications) and feel amazing. The ostomy pouch took some getting used to the first couple of months, but now it is no problem. I never realized how badly UC affected me. Even though I always felt my disease was pretty moderate before that last terrible flare... I now realize I was in denial about how poorly I felt. I now remember what it feels like to be healthy. I have so much energy and am pain free. Not to mention that I am on zero meds! I am back to eating most foods now that I am healed up (except gluten since I also have Celiac Disease) and am having fun going out to dinner with friends again. I will be thankful for my surgery every day for the rest of my life. I just got the okay yesterday to hike, bike and even perhaps squeeze in an easy day of snowboarding before the season ends. I am thrilled!

Surgery is a good option if you tire of medication side effects and restrictive diets. It gave me my life back.

There is humira and a new drug my doc was talking about called MLN-0002. The remicade is working for me but I have been getting the joint pain but were it is tolerable. It bugs me and hurts but I live with it. I also get a rash, and heart burn from the remicade and I have developed a sore throat lately. It has healed the left side of my colon completely and the right side only has mild inflammation. I hope you find some relief. That new drug alot of Crohn's people have used only a few on here.